Aspergers' article and check list

Until 1995, few Americans had ever heard of Asperger's Syndrome; today, clinicians estimate that anywhere from one in 300 to one in 500 children have it. If there's such a thing as a ''diagnosis du jour,'' Asperger's is it.

Asperger's Syndrome means there's something wrong with the wiring on the right side of the brain, the place where communication and sensory integration occur. It's not that these children can't talk; most of them are very smart, if not gifted, and have incredible vocabularies. What they typically can't do is read social cues or even notice them. When they do, they may react so inappropriately, from being rude or crude to downright violent, that other children don't know how to respond.

To the playmate, a child with Asperger's can seem as if he's from another planet. Indeed, the child himself may feel that way: He's not only out of sync with his peer group, but he knows it and doesn't know why or how to change.

Nine-year-old Jason Mitchell was diagnosed three years ago. ''It's not a bad thing,'' he says. ''It doesn't make you a freak, it just makes you special in your own way.''

A third-grader at the Gibbons School in Stoughton, he often relies on his second-grade brother, Scott, for advice (''Is that kid being mean to meor not?'') and for help to calm down.

''I promise him `alone time' at home,'' says Scott.

There are four other children also diagnosed with Asperger's in this public elementary school. Prior to 1995, there were never more than one or two children diagnosed with the syndrome, ''although the kids have always been here,'' says principal John Griffin.

The pattern of behaviors that make up the syndrome was first identified by Hans Asperger in 1944. The diagnostic criteria weren't put into writing in this country until 1994, however, when the syndrome was placed on the high-functioning end of the autistic spectrum. That explains the surge in diagnoses as well as many misdiagnoses, says psychologist Tony Attwood, the international expert on Asperger's, speaking by telephone from his home in Brisbane, Australia. He is author of ''Asperger's Syndrome, A Guide for Parents and Professionals'' (JKP Press).

At the same time, though, ''There also is a genuine increase in cases,'' including children who were misdiagnosed with such disorders as ADHD (Attention Deficit/Hyperactivity Disorder). More controversial is whether there are more cases due to a combination of environmental and genetic factors. (It tends to run in families and affects males more than females.)

Asperger's is not something that goes away, but children can learn to accommodate and live with it. The key is getting them an appropriate range of help, from an aide in the classroom to a speech and language therapist. The key to that is an accurate diagnosis. Which brings Attwood to his first bit of advice.

''A diagnosis is often a matter of opinion,'' he says, ''so you want someone whose opinion is based on lots of actual experience with Asperger's,'' preferably either a pediatric neurologist, child psychiatrist, or developmental psychologist.

His second bit of advice is this: Because there is so much individual variation in Asperger's, it's the parents' responsibility to become the expert on their child. That means understanding how the world feels to him so parents' responses are appropriate.

''I feel weird, like I'm an alien,'' is what Jason Mitchell often tells his parents, Lynn and Rob.

''That's how many of these kids feel,'' affirms psychologist Jeanne Angus, founder and director of the STAR School in New York City. With an enrollment of 23, it is one of only a few elementary schools in the United States for children with Asperger's.

Parents may have their first hint that something is different about their child when he's 3 or 4.

''Usually, raising your voice or your eyebrow is enough for a preschooler to know, `Uh-oh, mom's angry.' Not this child,'' says child psychiatrist Daniel Rosenn of Wellesley, who specializes in Asperger's and related disorders. (Tipoff to how frequently this disorder is being diagnosed: He sees two or three new clients a week and has a 14-month waiting list.)

''If you sound a little annoyed, he thinks you're furious,'' says Rosenn. ''If you are furious, he thinks he's in danger. Survival instincts take over. He'll hit you because he thinks you're going to hit him, even if you never have before.''

There are two reasons why this child so dramatically misreads the actions of even the people who love him most: He can't distinguish gradations of emotions and he's incredibly sensitive to sensory input, including loud noises such as yelling.

''Neurologically, they can't handle the decibels,'' says Echo Fling, past president of the Asperger's Syndrome Coalition of the United States. She chronicles her experience as the mother of a child with Asperger's in ''Eating an Artichoke, A Mother's Perspective on Asperger Syndrome'' (JKP Press).

Here's how Rosenn tells parents to understand their child: ''Think of bits of information as threads that are woven into a tapestry. Your child doesn't have equipment to integrate the threads, or he focuses on one thread and reacts in a distorted way.'' Once you realize this, he says, it's easy to see why a child values repetition and sameness: ''He doesn't have to reintegrate information. He doesn't have to work so hard.''

Once something sets him off, a child may experience what Rosenn and others call ''the meltdown.''

It's a temper tantrum writ large, 40 or 50 minutes long, with no way to help him calm down. What's more, says Angus, ''It could simmer for hours, exploding again at some minor thing.''

Most parents quickly decide they'll do anything to keep their child from suffering like this again. It's a wise decision, says Attwood, but one fraught with difficulty.

''To the outside world, including often your families, this child looks normal,'' he says. ''They blame his behavior on you: `You're too soft, you're spoiling him.''' In fact, he says, almost any strategy that works for parenting the typical child, from telling him to get ready for bed to changing your mind about letting him watch TV, doesn't work.

It's typically not until a child is in preschool and faces the complexities of a peer group that the many pieces that make up Asperger's come together and a diagnosis is possible, says Dania Jekel, executive director of the Asperger's Association of New England.

''Most people automatically take in the world with a social filter that these kids don't have,'' she says. Maybe a child drones on and on about a subject he's focused on, not realizing he's boring a playmate. Or he misinterprets a playful gesture as hostile and ends up in a fight, or turns on his heels when he's done with the conversation, even though the other child is not.

One hallmark of Asperger's is the lack of eye contact.

''It's not that they look at a face or eyes and can't read the emotion, it's that they don't look at all because they don't expect to find information there,'' says speech and language pathologist Elsa Abele of Boston University. She has been leading social skills groups for children with Asperger's since 1993 and has about a two-year waiting list.

While Asperger's does not go away, children can learn to process what they are not wired to do naturally. Years before she knew her son had Asperger's, for instance, Fling figured out that he couldn't verbalize his feelings or interpret other people's facial expressions.

She invented the ''face game,'' where he would mimic her exaggerated facial contortion (sad, angry, surprised, scared). Eventually, he could verbally attach feelings to them, including his own.

The more familiarity and predictability in a child's life, the better. Lynn Mitchell, who has three younger children in addition to Jason, creates a large calendar each month and color codes each person's activities. Jason studies and studies it.

''If it's on the calendar that there's a Monday holiday and therefore no school, he can cope,'' she says, ''but throw in a snow day and he falls apart.'' Similarly, she and Rob have learned it's critical to help Jason anticipate contingencies: ''We're going for a haircut. If there's a wait at the barber's, we'll get ice cream first.''

In other words, life needs to be broken down into step-by-step pieces, like a road map or a script. Consider getting ready for bed. He needs a literal, detailed checklist: Take off shoes. Take off socks. Take off pants. Put on pajama bottoms. Go into the bathroom. Take toothbrush out of its holder.

''Once he's mastered that [routine], he can move on to the next one,'' says Jekel.

Fling learned early that rules make all the difference. Her son's life is full of them: ''The rule is, if someone smiles at you, you smile back at them.'' ''The rule at the supermarket is that you can't ask people about what's in their cart.'' The problem, of course, is that rules don't cover gray areas.

While reading social cues may never be automatic, Abele says children with Asperger's can become comfortable and adept enough to go to college, have a career, marry, and have children. ''But they always have to stop, and think, and process social information the way the rest of us process academics. It takes a lot of work,'' she says.

As it says at the bottom, this is not intended as a diagnostic tool, but if your child
scores more than 2 on many answers, you may want to have an Asperger's/Pervasive Developmental Disorder (PDD)
evaluation done.
0 = rarely
5 = frequently
I personally believe that PDDs in general are often missed as a diagnosis.
Sometimes the symptoms you see look just like ADHD, ODD, or Obsessive Compulsive Disorder (OCD). The lack of
peer-appropriate social skills (i.e. no friends in age group) is a key component to
the diagnosis.
Social and Emotional Abilities
1. Does the child lack an understanding of how to play with other children? For
example unaware of the unwritten rules of social play.
0____I____I____I____I____5
2. When free to play with other children such as school lunchtime, does the child
avoid social contact with them? For example, finds a secluded place or goes to the
library.
0____I____I____I____I____5
3. Does the child appear unaware of social conventions or codes of conduct and
make inappropriate actions and comments? For example, making a personal
comment to someone but the child seem unaware how the comment could offend.
0____I____I____I____I____5
rarely frequently
4. Does the child lack empathy, ie. the intuitive understanding of another person's
feelings? For example, not realising an apology would help the other person feel
better.
0____I____I____I____I____5
rarely frequently
5. Does the child seem to expect other people to know their thoughts, experiences
and opinions? For example, not realising you could not know about something
because you were not with the child at the time.
0____I____I____I____I____5
rarely frequently
6. Does the child need an excessive amount of reassurance, especially if things are
changed or go wrong?
0____I____I____I____I____5
rarely frequently

7. Does the child lack subtlety in their expression of emotion? For example, the
child shows distress or affection out of proportion to the situation.

0____I____I____I____I____5
rarely frequently

8. Does the child lack precision in their expression of emotion? For example, not
understanding the levels of emotional expression appropriate for different people.
0____I____I____I____I____5
rarely frequently

9. Is the child not interested in participating in competitive sports, games and
activities.
0____I____I____I____I____5
rarely frequently
10. Is the child indifferent to peer pressure? For example, does not follow the latest
craze in toys or clothes.
0____I____I____I____I____5
rarely frequently

B. Communication Skills

11. Does the child take a literal interpretation of comments? For example, is
confused by phrases such as "pull your socks up" , "looks can kill" or " hop on the
scales" .
0____I____I____I____I____5
rarely frequently

12. Does the child have an unusual tone of voice? For example, the child seems to
have a ?foreign? accent or monotone that lacks emphasis on key words.
0____I____I____I____I____5
rarely frequently
13. When talking to the child does he or she appear uninterested in your side of the
conversation? For example, not asking about or commenting on your thoughts or
opinions on the topic.
0____I____I____I____I____5
rarely frequently
14. When in a conversation, does the child tend to use less eye contact than you
would expect?
0____I____I____I____I____5
rarely frequently

15. Is the child's speech over-precise or pedantic? For example, talks in a formal
way or like a walking dictionary.
0____I____I____I____I____5
rarely frequently
16. Does the child have problems repairing a conversation? For example, when the
child is confused, he or she does not ask for clarification but simply switches to a
familiar topic, or takes ages to think of a reply.
0____I____I____I____I____5
rarely frequently
C. Cognitive Skills

17. Does the child read books primarily for information, not seeming to be
interested in fictional works? For example, being an avid reader of encyclopaedias
and science books but not keen on adventure stories.
0____I____I____I____I____5
rarely frequently

18. Does the child have an exceptional long term memory for events and facts? For
example, remembering the neighbour?s car registration of several years ago, or
clearly recalling scenes that happened many years ago.
0____I____I____I____I____5
rarely frequently
19. Does the child lack social imaginative play? For example, other children are not
included in the child's imaginary games or the child is confused by the pretend
games of other children.
0____I____I____I____I____5
rarely frequently
D. Specific Interests
20. Is the child fascinated by a particular topic and avidly collects information or
statistics on that interest? For example, the child becomes a walking encyclopaedia
of knowledge on vehicles, maps or league tables.
0____I____I____I____I____5
rarely frequently

21. Does the child become unduly upset by changes in routine or expectation? For
example, is distressed by going to school by a different route?
0____I____I____I____I____5
rarely frequently
22. Does the child develop elaborate routines or rituals that must be completed? For
example, lining up toys before going to bed.
0____I____I____I____I____5
rarely frequently
E. Movement Skills

23. Does the child have poor motor coordination? For ex-ample, is not skilled at
catching a ball.
0____I____I____I____I____5
rarely frequently

24. Does the child have an odd gait when running?

0____I____I____I____I____5
rarely frequently
F. Other Characteristics
For this section, tick whether the child has shown any of the following
characteristics:
a) Unusual fear or distress due to:

e) Unusual facial grimaces or tics
If the answer is yes to the majority of the questions in the scale, and the rating was
between two and six (ie. conspicuously above the normal range), it does not
automatically imply the child has Asperger's Syndrome. However, it is a possibility
and a referral for a diagnostic assessment is warranted.